"The trouble is that once you see it, you can't unsee it. And once you've seen it, keeping quiet, saying nothing, becomes as political an act as speaking out. There is no innocence. Either way, you're accountable."
— Arundhati Roy

Pages

27 September 2013

Literal Silencing

Trigger warning: Medical violence, abuse, ableism, profanity
Correction: The original version of this post stated that Kade Hanegraaf's surgery occurred at the University of Washington Hospital. The surgery actually took place at the University of Wisconsin Hospital in Madison, Wisconsin. Salon also published an article, quoting me actually, that contains more information from the surgeon.

Literal Silencing

Have you heard about Kade Hanegraaf yet? He's an autistic sixteen-year-old, who also has Tourette's, living in Appleton, Wisconsin, with his twin brother, Kyle, also autistic. And this week, the Wisconsin State Journal reported on a surgery forced upon him (link also has severe trigger warning) two years ago in 2011 at the University of Wisconsin Hospital that almost went unnoticed.

Almost.

One of Kade's tics is screaming.

His parents said of him, "It was absolutely horrific. We couldn't go anywhere." So they forced him to undergo surgery to silence him. To make him quiet. Good. Quiet. Good. Quiet. Good. Quiet. Good and quiet. Quiet and good. Good. And quiet. For them.

They made it about them.
If screaming was a conflicting access need, there are other ways to address the issue than forced surgery. I've heard from other autistic people writing that they learned coping skills and ways to avoid some types of self-harming, for example, from other autistic people. Noticeably not from therapists, clinicians, or other professionals.

Was the screaming harmful to Kade? Did Kade want the procedure? Did Kade want to stop screaming? Even if the answers to these questions are yes, neither the news article nor the surgeon's published academic article (trigger warning on this article as well, and it's the full text as a PDF) mention anything whatsoever about seeking consent from Kade.
(And yes, the surgeon, Dr. Seth H. Dailey, who teaches in the Division of Otolaryngology-Head and Neck Surgery, Department of Surgery, at the University of Wisconsin School of Medicine and Public Health. Despicable.)
They claimed the surgery was reversible. Who the hell knows? That may not be true, and even if it were, that doesn't justify performing surgery without the patient's consent.

The surgery was performed because Kade was an inconvenience to his parents.

...

...

...

I haven't done math in years, but the calculus seems to go a little like this:

Inconvenience + legally enforced power = medical torture

Solution: Justified.

...

...

...

This is torture. To invade someone's body in total violation of their bodily autonomy and perform nonconsensual, involuntary medical procedures on the whim of another person for what amount to purely cosmetic purposes.

But because Kade is autistic, anything goes. Anything is treatment. Anything is permissible. His body is not his own; it belongs to his parents. His life is not his own; it belongs to his parents. His very existence is a burden and must be dealt with accordingly. If he creates further inconvenience beyond existing, he can be, quite literally, silenced. He is not a human being with autonomy, agency, and the ability to communicate consent or lack thereof.

His communication doesn't matter. His parents did not choose to engage in communication with their son. Instead, they chose to physically, medically, pristinely, callously, clinically cut out his voice from his throat.

...

...

...

This is morally reprehensible. It ought to be appalling to anyone with even the most minute conscience or shard of empathy for fellow human beings. It is horrific and hideous. It is the epitome of selfishness on the part of the parents. This is an outrageous violation of human rights and bodily autonomy, and there is no conceivable justification for any of this.

But if we can be silenced in public discourse, erased from academia and scholarship, segregated in special education classrooms and residential treatment centers and institutions, hidden in sheltered workshops, and objectified as passive recipients of services and treatment and a future cure for who we are...

Then why not literally silence us?

Why not?

...

...

...

Assault the subaltern, those who have no position whatsoever to challenge structural power, because you know we can't fight back. We must submit, quietly, without protest, to the surgeon's hands, to the parents' unilateral, selfish decisions, because we have no agency, we have no feelings, we have no choice, we have no ability to make a choice, we have no self, we have no being, we have no voice, we have no humanity, we are nothings, not-humans, simply occupying space and lucky if we are ignored as we usually are anyway.

Course you gotta be strapped down and your head put in one of those things and bright lights white walls blah blah. Arms bound with thick leaden cloth. Spread like an angel. Keiya is compliant. She's always been a patient like that, so good so good, with the nurses and caregivers cooing at her like an obedient pet.

The doctor motions. Keiya spreads her arms wide.

I, too, am an unclaimed colony.

(Meda Kahn's "Difference of Opinion" has got to be some of the best fiction I've read about an autistic character. Part of the reason for "best" is probably "realistic." Not just with the autistic, but also what happens. How Keiya is a thing to be controlled, a thing to be made submissive, a thing to be made compliant, a thing that has to be fixed, to have an adjustment, if it ever lays claim to self.)

...

...

...

It's obviously not harm if it's done to an autistic. Autistics aren't people. Doctors can't harm autistics; everything is for their good society's good their parents' good everyone's good, good, good, good.

But if we have no voices why not cut out the vocal cords because we have nothing to say we've never had anything to say we'll never have anything to say and even if on the off-chance we say something it means nothing nothing nothing so no problem, whoop-dee-doo, cut out them vocal chords and yay, problem solved for those Good Patient Saintly Normal People putting up with the burden of disabled existence.

Silence is their reward.

...

...

...

You can reach the surgeon at dailey@surgery.wisc.edu. Be nice. After all, he's a Person, capital-p, and we're just manipulable, pliant things.

I'd say, fuck all of the people involved, but my voice isn't a real voice can be silenced all the damn time doesn't have to be listened to doesn't have to exist doesn't exist doesn't exist doesn't exist doesn't

42 comments:

I'm curious what was making him scream all the time and what would have been solutions to help him and his parents. Maybe his parents could have worn earplugs all the time instead of putting him through surgery. I can't believe surgery was the only thing anyone could think of.

"Six months postoperatively, there was 90% reduction in tic frequency and 50% reduction in intensity. Additionally, he has shown improved ability to converse with his peers, participate in school activities, and even has improved nutritional status."

You're an idiot. This surgery improved his life and he can still speak. Your hysterics do nothing for the cause.

Speaking as someone who's been put through cosmetic (e.g., not lifesaving and not for the purposes of preserving function) surgeries involuntarily - the criteria you use aren't enough. This was a surgery of convenience, and I can only imagine the betrayal involved in feeling like one's own parents would rather forcibly alter your body than try to understand you and what you're trying to communicate, and the pain and powerlessness involved in trying to get your needs across but being rendered unable to.

All of this also doesn't even address the fact that Kade might have been communicating pain or distress from a real problem that was going unaddressed because his screaming was being treated as a "behavior." This is not out of the realm of possibility, as there are plenty of other examples of disabled people being punished or harmfully "treated" for reactions they had to other forms of abuse, to ongoing sickness (e.g., head lice) or to serious and possibly life-threatening injury that other people weren't aware of. I hope for Kade's sake that this isn't the case, but given the nature of the parents' concerns I wouldn't put it past them to look past a major issue in seeing to their own needs and that of the child they want to have, at the expense of the child they have now.

The surgery has made him more manageable and socially acceptable. That's not the same as improving someone's life. Not even close.

That's the problem. While his screaming could have been a tic only Kade can really know if he can stop it. as a tourettic I can partially justify the surgery as screaming tics can be so incredibly damaging and quieting them actually has the possibility of improving the function of his voice. (I know this from experience (natural waxing and waning of tics not through surgery) However, we don't know if it's a tic. And we don't know if Kade consented

What's next cutting off their arms, hands, or legs? Screaming may be the child's only way to communicate. Instead of rendering the child completely speechless like a slave or disobedient pet who barks too much for the neighbours, why not look at what's causing the child's discomfort & agitating them to react by screaming - or is that far too logical & demanding to ask someone to examine how they might be overwhelming their ASD child?

This came up in my Facebook feed earlier today. What I said there was this: This reminds me of some of the things Amanda Baggs described being done to children who self-injure, including one boy who was restrained AND confined to a box AND had his teeth removed all on the excuse that these things were "needed" to protect him from self injury: https://ballastexistenz.wordpress.com/2006/05/09/extreme-measures-and-then-some/

And I also wrote this: This also reminds me of one woman I talked to some years ago who visited an institution for women with disabilities (I think intellectual and psychosocial disabilities) somewhere outside the U.S., I forget where. Apparently there was a pervasive problem in that people were targeting the women in the institution for rape, which sometimes resulted in pregnancy. So they decided to "solve" the problem by sterilizing the women. Of course this did nothing to protect them from rape, but in their mind this "solved" the problem because now they would no longer be impregnated the next time they were raped.

Coming from a parent of an autistic child who does nothing but scream.. you are the most irresponsible cruel and ignorant people I have heard about in a while. Your son was given to you this way you learn to love every minute of it or you call someone and you tell them that you can't take proper care of your child. I would think of you as more of a person if you had done that. If not you be a parent you tell them over and over and over again to stop screaming. Shhh ... I've been doing it for years but guess what it's working. My son now understands what be quiet means and where he needs to be quiet. You are a disgrace to the word parent... a parent is supposed to love their children unconditionally no matter what.. I can't imagine all the other things you have made your child suffer through. You make me absolutely sick and I wish I could take that poor boy away from you. Please do another child a favor and don't ever reproduce again

I find it interesting that no one here seems to have considered that it was entirely possible for *Kade* to have been distressed by his vocal tic. (Tics are, by definition, not under the control of the individual.) I also find it interesting that no one has expressed any concern for Kade's twin brother, who is also autistic and very sensitive to sound. Does only one autistic person per family matter? Also, the average decibel level of the screams was 90, capable of causing permanent hearing loss (for everyone, including Kade). He also screamed an average of 2,000 times per day; if you assume he slept 8 hours per day, that works out to 125 screams per hour, or more than twice each minute. No one here seems to have considered that this sort of repetitive screaming is damaging to the vocal cords, and can cause very real physical pain, not to mention permanent damage (including nodules and vocal hemorrhage). I'm also curious how one would coerce things like an improved ability to converse with peers including vocabulary gains, increased participation in school activities, and improved nutritional status. Kade's mother reported that he was so stressed by his screaming tics that he had trouble eating; post-op, his appetite has improved. He hasn't lost his voice, or his ability to communicate; he hasn't been "de-barked" or "de-voiced" or silenced. His voice is *slightly* more breathy and *slightly* less powerful than it was before, and the surgery is reversible. I understand all of the concerns various people have mentioned, but it seems to me that many people have jumped to many conclusions. To call this torture is an insult to those who have truly suffered torture, and I would urge people to be more cautious and not toss that word around so lightly and with so little investigation.

Where did you not read what the original author wrote? She said "If screaming was a conflicting access need, there are other ways to address the issue than forced surgery." That means figuring out how to accommodate everyone involved. Yeah, duh, the autistic brother with the sound sensitivity has the access need of needing to not be around sound like screaming, but the answer to that is not invasive nonconsensual surgery on the brother who's screaming! How hard is that to grasp?

1) Have you been through nonconsensual medical care? If not, please don't try to define torture to the exclusion of those who have. If there's any question as to whether some forms of that could be torture, it's a legal one (e.g., the necessity of state action as part of the definition) and not one based in the facts.

2) I'm at best skeptical of the claim that this was completely and meaningfully voluntary, a) because of the power dynamics at play (ostensibly neurotypical adult parent vs. autistic minor child) and the way that disabled perspectives that are separate from those of parents and providers often get erased, and b) because of the media coverage and how the story was told. Where was Kade saying, Yeah, this was the best thing that ever happened to me, while his parents were quoted talking about how much easier he was to manage in public? Where was his perspective and metaphorical "voice" at all (and erasing him from the story isn't about preserving privacy, because the whole world knows or can know who he is now)? The way this got told is the way this always gets framed - disabled people, especially disabled children, as inconvenient objects, to have decisions made about them by nondisabled people. That doesn't bode well for consent being involved here.

3) Competing access needs are a thing (and believe me, I know this as a person with severe sound sensory processing issues). But I'm also skeptical of the idea that the options are invasive means (and surgery is not really ever a non-invasive means) of preventing him from screaming and just doing nothing about him screaming, ever... especially because that kind of false dichotomy has been used to support the use of other coercive means of treatment like aversive behavioral modification, when people never considered other factors and focused on the behavior in isolation without looking at cause and effect. I don't know if there's a basis to call all of this a tic or not ("tic" has the language of Tourette's, which is different than autism), based on the doctor's qualifications. If it's a stim, then there's nothing to indicate that it couldn't be rerouted to something that serves the same purpose. And if it is a tic... I mean, he wouldn't be the first person with Tourette's or a similar condition who had a major tic. How about finding people with the conditions to help develop on coping mechanisms and workarounds? But nondisabled people don't think to look at things from a disabled perspective, or even seek out one, so instead people just go on ahead with intrusive, coercive things that, if anything, can disable people further (why hello there, PTSD, nice to meet you...).

1. I agree with you CS, this surgery, performed 3 years ago on a boy who was 14 years old at the time had much more benefits than drawbacks. Also, regardless of disability, 14-year-olds who were not medically emancipated do not have much say in the matter of their health-care.2. I think that some people here accusing those who agree with the surgery of being monsters are themselves monstrous. They don't care about the health and sanity of the family or the children. Have any of you heard of Singer's Polyps? Do any of you know what 90 decibel sounds do on the ears? Do any of you know what it is like to be sensitive to sound yet have someone scream at the top of their lungs every minute?3. The screaming was NOT an autistic stim, it was a TS tic, a very severe tic that was distressing for the boy and he supposedly did not want it. The procedure is supposedly reversible and TS usually mellows out in adulthood.4. I am a 22-year-old with High Functioning Autism and I know people with Tourrette's syndrome.

1. My post did not go through because I was not properly logged on.2. I am a 22-year-old College student with High Functioning Autism and other things. I also know some wonderful people who have Tourrette's Syndrome.3. I agree with CS. This surgery had more benefits than drawbacks. It is also supposedly reversible when the boy's Tics become less severe. Furthermore, 14-year-old children do not have much say in their own health-care, regardless of disability.4. Those of you accusing reasonable people, who agree that the surgery was beneficial, as monsters are themselves monstrous. That poor child has severe Tourrette's Syndrome in addition to Autism and the verbal tics were involuntary and causing himself distress in addition to his family. TS tends to mellow out with age but it doesn't always do so enough and the teenage years tend to be the worst.5. Have any of you ever suffered from auditory sensitivity while someone next to you is screaming at the top of his or her lungs? I am a chronic migraine sufferer so I know all too well.

I find it interesting that no one here seems to have considered that it was entirely possible for *Kade* to have been distressed by his vocal tic. (Tics are, by definition, not under the control of the individual.) I also find it interesting that no one has expressed any concern for Kade's twin brother, who is also autistic and very sensitive to sound. Does only one autistic person per family matter? Also, the average decibel level of the screams was 90, capable of causing permanent hearing loss (for everyone, including Kade). He also screamed an average of 2,000 times per day; if you assume he slept 8 hours per day, that works out to 125 screams per hour, or more than twice each minute. No one here seems to have considered that this sort of repetitive screaming is damaging to the vocal cords, and can cause very real physical pain, not to mention permanent damage (including nodules and vocal hemorrhage). I'm also curious how one would coerce things like an improved ability to converse with peers including vocabulary gains, increased participation in school activities, and improved nutritional status. Kade's mother reported that he was so stressed by his screaming tics that he had trouble eating; post-op, his appetite has improved. He hasn't lost his voice, or his ability to communicate; he hasn't been "de-barked" or "de-voiced" or silenced. His voice is *slightly* more breathy and *slightly* less powerful than it was before, and the surgery is reversible. I understand all of the concerns various people have mentioned, but it seems to me that many people have jumped to many conclusions. To call this torture is an insult to those who have truly suffered torture, and I would urge people to be more cautious and not toss that word around so lightly and with so little investigation.

"Debarking" surgery is considered unethical and is illegal in the UK and many other European countries. For dogs.I can't even get my head around how this could be legally done to an autistic child. I also don't care if people are now saying this was in regard's to his tourette's rather than his autism. Surgery intervention on Tourette's syndrome is usually deep brain stimulation, only performed on consenting adults and is still considered as experimental. It also aims at removing the causes of symptoms (tics) clearly identified as non-communicative, rather than simply turning down the volume. If improvement of behaviour and communication is registered - in dogs or in this autistic child (hey, let's not discriminate, it's the same intervention) this makes me think that those changes could have been brought upon with non-invasive therapy alone. The fact that this intervention even took place and the way it's benefits ("we can now 'handle him better' in public places") are discussed in the media can have impact on children with all kinds disabilities and 'disturbing' behaviour. It says a lot about where the individual rights of those who can't articulate their choices really stands. And it's not a good place.

As someone who has been around a lot of autistic children and parents I will say it's not right to judge parents until you hear their side of the story. Most parents of autistic children spend an amazing amount of time trying to learn how to help their children, finding special schools, going to many different types of therapists. I'm sure if you spoke to the parents of these boys, you would find that they spent months if not years trying to find a solution to this problem. Not only that, but this solution seems to have helped him. Many autistic children have great difficulity grasping abstract ideas and could not make this decision for themselves. Don't you think these parents have gone through enough heartache?

As someone who is autistic and has been around a lot of autistic people (growing up and now as an adult), I will say that people should be taking a harder look at how others treat autistic people - ESPECIALLY parents, educators and providers. Do you have any idea how high the number of autistics with post-traumatic stress disorder, or just a plain extensive trauma history, is? And it's not generally being caused by strangers, either. A lot of stuff done by people claiming to love and care for disabled people flies under the radar, some of it with legitimate good intentions and some of it only using the language of good intentions as a shroud. Both kinds of abuse and mistreatment not only keep happening but are granted impunity when they're found out because of the (supposedly empathetic) "DON'T JUDGE" mentality that seems to only apply to nondisabled adults and not to the people in their care.

"Many autistic children have great difficulity grasping abstract ideas and could not make this decision for themselves."

Disgusting. Autistic people can't tell when their bodily autonomy is being violated? We're not competent enough to protest when our throats are penetrated by surgeons' knies? By your logic, any objection we make to anything could be written off as "just our autism talking," and we could be subjected to any number of reprehensible, dangerous, or even deadly things against our wishes. Chelation? Lobotomies? Forced sterilization? You don't need our consent, because we can't make decisions for ourselves.

Sound ridiculous? All the things I've mentioned either happen today, or have happened in the past several decades.

"Many autistic children have great difficulity grasping abstract ideas and could not make this decision for themselves."

Disgusting. Positively revolting. Autistic people aren't competent enough to protest when our throats are penetrated by surgeons' knives? By your logic, our objections to anything could be written off as "just our autism talking." Chelation? Electric shocks? Forced sterilization? Our consent doesn't matter, because we can't make decisions for ourselves.

Do I sound hyperbolic? All the things I've mentioned either currently happen to autistic people, or have happened to us within the past few decades.

If he is high functioning enough to talk then he is high functioning enough to understand the concept of surgery, surgery is not an abstract concept.

In any case, I believe there are medications for tourette's syndrome, they should have at least attempted to use those before the idea of surgery ever came into consideration, which they don't seem to have done.

There are medications for tourettes syndrome but all of those are coincedentally partially effective meds that only work for some. It's not a guarantee for everyone. It sounds like they did try to use them.

My child also screams on average of 2000 times per day.. at the same 'damaging' levels ... and sleeps for 10. He sees an ENT regularly and has never had a problem with pain or swelling or anything. He had his tonsils and adenoids removed for obstructive sleep apnea years ago and has been screaming since with no side effects. It has decreased rapidly with proper therapy and parenting. Ive seen it first hand don't try and say this is not completely and totally wrong.. especially without his consent

I fail to understand how the potential absence of Tourette's mitigates the fact that Crystal's child screams loudly 2000 times per day. She lives with this behavior, yet she can see that surgical silencing is wrong. If she won't make excuses for this procedure, maybe you shouldn't, either.

tourettes syndrome changes the treatment protocol for such screaming. Tics are not under the control of the induvicual and though they may worsen with stress or other factors they are not conciouslly used as communication. However, as anything can be a tic what is a tic for someone may not be a tic for another. Only Kade can really tell us if it's a tic or not, and therefore the nonconsensual surgery is terribly wrong. (I have tourettes btw)

well. I just lost my comment, but I will try reformulate what I feel we have to take away from this. Devocalisation or 'debarking' surgery is considered unethical and has been made illegal in many countries in Europe. For dogs and cats, that is. But this is the same intervention. Some are pointing, of course, to the fact that the screams were seen as tics, part of the comorbidity Tourette's syndrome rather than part of the boy's autism, (sadly, in some media reports, tourette's wasn't even mentioned) and they see the reports on improvements of both, frequency of screaming and social integration as credible results on merely lowering the volume of the screams. But for tourette's patients suffering from violent vocal or physical tics, if therapy and medication do not bring any relief - and only for consenting adult patients - the surgical intervention (still experimental at this stage) is deep brain stimulation aiming to remove the triggers of tics, NOT to simply muffle the volume. My guess is that with the now 'easier to handle' child, other therapy paths have been taken simultaneously, and are bringing those results. I don't really know if screaming with less volume is actually less tiring on the organism, as some have said, because the impulse leading to it would still be experienced in the same intense way..? I will not claim to have enough knowledge about it, but it seems blurry to me.the main question remains on the ethics of surgical intervention to remove (even temporarily) the symptoms and/or ways of communication on a child with double diagnosis like this. There is a massive danger in applying the principle of 'making the patient easier to handle' (in public..) to children or adult patients unable to consent. Declawing cats, debarking dogs.. these methods(I understand, legal and common in the US while forbidden elsewhere), show a society that choses the shortcut to render impossible behaviours with no consideration to possible repercussions rather than accommodating, understanding and, if necessary, diverting and re-educating behaviours.. if there is a way to simply CUT IT OUT, even if it may be part of a communication process DIFFERENT than that used by humans (in the animals case, think neurotypical otherwise), it will be done. It will even be celebrated as a success story, as observed in the media. I don't think we know enough about the family's pathway to this intervention. But I completely understand the shock this new extreme method gives to many and I hope, the widely reported 'success' of the surgery will not lead to a flood of parents asking medical assistance to "bring the volume down" on their autistic kids.

I read both the Wisconsin journal article Lydia links and the Salon article about this story. http://www.salon.com/2013/09/27/is_surgically_altering_an_autistic_boys_voice_cruel_or_kind/singleton/

The Wisconsin State Journal's article is pure shock journalism meant to push a curist agenda. Notice the TACA (Talk About Curing Autism) link in the upper left. I knew I was reading off of used toilet paper at that point. The article explains nothing except "We made an autistic boy less annoying muhahahahahaha". Seriously, the patterns on a sheet of Cottonelle have more information pertaining to this story than Wisconsin journal has. Go look. Its like they wrote a 3rd grade book report on the abstract of the paper Dr. Dailey submitted to Journal of Voice and didn't even get that straight. Then again facts and evidence have never stopped a curist before. http://www.jvoice.org/article/S0892-1997%2812%2900189-0/abstract

Salon at least interviewed the surgeon, Dr Seth Dailey. The statistics Dr. Dailey provides are astonishing. 2000 tics a day at 90dB. To put that in perspective , that is the sound of a road worker with a jackhammer next to your car 2000 times a day. This is meant to ethically excuse the procedure. It's either amazing that a human being could do that, or its male bovine manure.

Dr Dailey says Kade's family "are active advocates for their children and leaders in their community.”. Where have I heard that before?.......oh yeah, Kelli Stapleton.

Also worth noting that Dr Dailey is not an autism expert. He is a throat surgeon. http://www.surgery.wisc.edu/profile/seth-dailey. Nothing in his list of clinical specialties suggests any expertise in treating autism. “Reduction of phonic tic frequency and intensity may also stimulate language development in patients [on the autism spectrum.” How does he make such a statement?

Finally in the Salon article, both Dr Dailey and Kade's mother say how happy Kade is now, but nobody will answer if Kade gave even the slightest shred of consent to this. Kade hadn't smiled in 3 and 1/2 years apparently, another astonishing statistic. I want to believe that ethically, this was the best thing for Kade, bit I can't. This reeks of curism.

As a person with tourettes and severe (not as severe as this thank goodness) screaming tics let me just assure you, they can make life HELL! When mine are bad I regularily lose my voice for days on end, and my throat is rarely ever not sore. I am not autistic, and therefore I can not comment on the accessibility of such behavioral interventions as CBIT (comprehensive behavioral intervention for tics) for those that are autistic in my own personal experience it is nearly impossible to significantly reduce tics for short periods of time, much less on a constant basis. In my own practice I have only managed to supresses them for maybe a minute, and htat at the expense of basically my whole body as the act of supression opens myself up to all of my motor tics full force. When any of my vocal tics are quieter it makes my life much easier. I can go more places without disrupting others, it makes the damage to my voice less severe, and I can plain here myself think. I have read comments that stated lessening the volume of tics wouldn’t fix the root cause, but I can assure you that at least in my case quieter tics can mean the world. However, at the same time it is sometimes distressing to me when something means that I can’t fufill a tic so at the same time it would require close communication with Kade in order to track the efficacy of a surgery, something that it didn’t seem like was possible from the information I have gleaned. ALSO, I would like to point out that botox injections are fairly common interventions to diminish the severity of motor tics, which they do by weakening the muscles invloved.

However, please don’t take this to mean that I am in ANY WAY condoning the actions of the surgeon or Kade’s parents. If Kade was unable to provide informed consent to this voluntary procedure then it is a terrible violation of rights. In addition, if he was unable to articulate that the screaming was a tic, i.e. something that was out of his control and therefore extremely to control through behavior management then there is no way of knowing whether the surgery stunted his communication or aided in dimishing a harmful and distressing tic. As Kade was never reported as having consented to the procedure and is not reported as being able to articulate as clearly as is needed to determine the true efficacy of such a procedure it is dehumanizing and a complete violation of his bodily autonomy to have this procedure done.

Um debarking completely removes an animals' voicebox and is irreversible. What Kade had done is reversible and only lowered his voice, it did not remove it. When he's 18 if he decides he wants to scream like a banshee and damage his throat until he can't even USE it anymore then by all means he can make that decision. I can assure you though he won't.

Autistic Hoya strives to be

trigger warnings

I use trigger warnings on my posts as I try to make this space safer. These may be helpful for people who have phobias, anxiety, or PTSD, and let people know about things that could be triggering beforehand.

Can't access my stuff?

If anything on this site is inaccessible to you for any reason, let me know how I can fix the problem or do better. I am in the process of making audio recordings of the more popular posts on this blog, which you can hear at Soundcloud.

Sharing my stuff

I believe in spreading good ideas and helping start critical dialogue. If you want to share (or republish, or teach, or link to, or quote, or talk about) my writing, feel free to do so as long as a) you are not making money off of my writing, b) you do not edit, redact, or censor my writing in any way shape or form (excerpts and quotations are fine), c) you leave my name on whatever you republish or share in a prominent location, d) you link back to this website or the specific page it originally came from, and e) you shoot me an email letting me know where/how you shared my stuff. I strongly disprefer fully republished posts, but am not opposed in principle. If you want to share writing from this site that I didn't personally write, shoot me an email so I can contact the appropriate author or put you in touch. If you want to use my writing for any purpose not covered by these conditions (i.e. you will make money off my writing), please ask me and do not assume you have my permission.

Header Image Description

Photo by Kory Otto-Jacobs, taken March 1st, 2013 in Farragut Square Park, Washington, DC, United States, for the National Day of Mourning vigil for disabled people murdered by family members or caregivers. This is an annual event sponsored by the Autistic Self Advocacy Network, the National Council on Independent Living, and the American Association of People with Disabilities, and was originally organized by Zoe Gross in 2012 following the murder of 22-year-old autistic George Hodgins by his mother.

This is a cropped, horizontal banner style black and white photograph depicting one of the vigils and its participants. In the center foreground, there is the back of a person's head with short dark hair; this person is wearing a woolen winter coat with their shoulders and upper-back visible. Facing the camera in the midground, also facing the center-foreground person, are several people wearing winter coats and scarves, many holding cameras, video recorders, or phones. The leftmost person is a dark-skinned woman with long gray frizzy hair; she is wearing a collared woolen dark winter coat. Beside her is a lighter-skinned man with straight dark hair and a neatly trimmed beard and mustache; he is holding a camera or video recorder in his left gloved hand and is also wearing a collared dark winter coat. Beside him and a little behind him is a white person of ambiguous gender wearing a knitted hat and a dark two-toned windbreaker. Beside this person and a little in front of them is a darker-skinned man with braids pulled behind his head, also wearing a woolen dark winter coat, holding a video camera on a tripod. Beside this man is an older Asian woman wearing a light-colored baseball cap under the hood of a light-colored windbreaker. There are two light-skinned hands holding a camera above this woman's head. All of those people are on the viewer's left-hand side and to the left of the woman in the foreground. On the other side, from the left of the woman in the foreground, there is a young white man with light-colored hair falling a little over his face, also wearing a dark coat over a light-colored shirt. He is looking a bit upwards. Beside him is a white woman with medium-dark hair tucked under a felt cap, also wearing a light-colored scarf tucked into her dark-colored woolen winter coat. She is wearing gloves and is holding a large white poster with handwritten mixed-case text that reads "Benjamin Barnhard" on one line, with the second line below it unintelligible. Below the text on her poster is a photograph of a young white man with a darkish background. Beside this woman with the poster is another white woman with medium-colored bangs, wearing a hood/scarf thing wrapped around her head, and a dark-colored double-breasted winter woolen coat. In front of this woman is an older person with very light-colored hair and fair skin, seated. Behind this woman and beside the previous one is another white person with light-medium hair, glasses with a slight tint, and a puffy winter coat. In front of this person is an older white man with slightly wavy hair, also seated. Behind him are two people, one appears to be white and a man and his holding a camera, and then closer to the viewer is a Black man wearing a dark-colored coat, interpreting the speech into ASL. In the background behind all of the people, there are a few naked trees on the viewer's left, a streetlamp near center, and multi-story modernist office buildings to the center and viewer's right.

Boring legal stuff

Links offsite are not to be construed as endorsement or acceptance of the ideas and opinions expressed therein. Nothing that I have written on any part of this website represents in any way any of the official opinions, beliefs, policies, or platforms of any organization, institution, or entity of any kind with which I am now or have at any time been either formally or informally affiliated or associated, nor is any content from this website endorsed, condoned, or approved by any such organization, institution, or entity except where explicitly stated by such an organization, institution, or entity on its own publication or website. I do not warrant that access to this website and its contents will be uninterrupted or error free, nor do I make any warranty as to the results that may be obtained from the use of this website and its contents, or as to the accuracy, reliability, completeness, or contents of any content, information, material, postings, or posting responses found on this website or any links to other sites made available on the website.

If you need to serve process to me for whatever reason (I hope you're not suing me?), you can email the summons/pleading/subpoena/etc. to me as a scanned attachment if your jurisdiction allows electronic service, or to request an address or fax number if your jurisdiction does not.